They say there are five stages of grief. I suppose there’s science behind it and the framework holds true for many people, but I’ve only known one stage since we first learned four months ago that Stephanie’s life would be cut short… heartbreak. It’s what I immediately felt on that cold Sunday morning in late January when we learned she had a rare liver disease, Primary Sclerosing Cholangitis. Continue reading “I Know the Exact Moment I Lost Hope”
Our Worst Nightmares Don’t End When We Open Our Eyes
The ten weeks since our daughter, Stephanie, was diagnosed with primary sclerosing cholangitis (PSC) have been a blur of hospitals, tests, and surgical procedures. A steady stream of GI specialists, radiologists and surgeons have poked, prodded and asked the same questions over and over. But despite their collective wisdom, they seemed to have no idea why Stephanie appeared to have skipped over the beginning stages of this normally slowly progressing liver disease and landed somewhere closer to the end.
Well, that’s not exactly true . . . they had one idea. Continue reading “Our Worst Nightmares Don’t End When We Open Our Eyes”
I Wanted an Answer Until I Got It
When I woke up on January 26, 2018 it never occurred to me that within a few hours I would discover my daughter was sick, and after thirty years of amazingly good health, she would never be well again.
All it took was three words – Primary Sclerosing Cholangitis – to send my relatively carefree existence into complete turmoil. All the things I had fretted about in the days before were instantly insignificant. Upcoming plans were immediately dismissed. From that moment life has been one dimensional, filled with doctors, hospitals, tests and surgical procedures. Continue reading “I Wanted an Answer Until I Got It”